Wednesday, January 26, 2011

Still here...

I'm still here. It's been a little rough around lately... and I promise that one day I will give all of you an explaination, but now is just not the right time. Hopefully, things for me will be getting a little easier. But for my poor little man... his "rough days" seem to be multiplying. He did have a nice little stretch where he was feeling good and playing a good bit, but the past few days have been so unfair. He's having a lot of trouble breathing. And his breathing treatments really aren't helping... and he's still at a high dose of steroids, so I can't really go up on them. So I'm not sure what to do or what's really causing the bad breathing. He tried to stand up to play a couple times today but then started having trouble breathing and wanted back in the rocker. It's painful to watch... and just not fair.

Not only is he struggling with the constant pain, but now he's struggling just to breathe. I don't know if he has a cold, if the sore in his airway is acting up, or what... but it's making me just a little uneasy that I'm doing everything that I would normally do when his breathing goes bad, and it's still not enough.

And now, there is no more doing bath on the table... only in the rocking chair. And even that is a complete struggle to keep him from having a nervous breakdown. He hates bath. I hate bath. My mom hates bath. Anyone who watches bath hates bath. And you have to actually see a bath to realize how traumatic it really is. I start having anxiety at least a good 2 hours before bath... and I think he senses it too.

I think we sometimes forget that he's almost 2 years old and is completely "intact" mentally. And just because he can't speak to us, does not mean that he doesn't know exactly what we are saying. So when we mention "bath" or a "diaper change," he immediately gets that pouty lip and starts with the anxiety attacks. The past few baths have just been miserable. I'm not sure if it's because he's having so much trouble breathing or that he's just at the age now where he hates us messing with him and holding him down.

Anyway, that's pretty much how it's been around here. We are taking one day at a time. If you have sent me an email or a message on facebook, and I haven't written you back... I am truly sorry. I really haven't been on my computer in a while or in the right frame of mind for that matter. I do want to say thank you, though to everyone for your kind words. It's touching that so many strangers who don' t even really know my situation are so supportive. I'm blessed with the best support system I could ever ask for. Please bear with me on the blogging. I'm trying hard to focus on what's important and using any free time I have to try and de-stress:)

Hopefully, my little man will be back to being his rotten, fiesty little self in no time.

Courtney ~ Whatever you do, sweet Mommy, don't feel the need to apologize. I wonder when you take time to rest... not just sleep but really rest. My love to Tripp. What an amazing lil man. What an amazing Mommy he has! Courtney, I am hugging you in my heart! ~Lori Tassin

Everything your doing for Tripp is amazing. Every struggle and hurdle Tripp goes through is remarkable. He gets his strength from you, Courtney. You both are truly blessed to have eachother and we are blessed to be able to listen and learn from you on what really matters in life.

You never need to apoligize. You're amazing and I admire you so much. I am POSITIVE that Tripp loves you so much! It killed me to read your post. I think of you and Tripp everyday and pray that things will start to turn around soon. I love you! Call if you every want to talk. Jenn

God bless you Courtney~you're an amazing woman. Not sure I've ever posted a comment, but I do read and PRAY for your beautiful little guy~and for you, also. I have to believe, somehwere out there is a cure for EB. I pray without ceasing, that cure will find it's way to precious Tripp ASAP! I've added Tripp, you and your family to several prayer chains. May you all feel the LOVE of Jesus...all around you. (((HUGS)))

Courtney, you could maybe do with asking your palliative care consultant about ketamine or something similar for bathtimes

As Tripp is having such a rough time with diaper change I'm wondering a little if it might be time to get him a potty chair - I would guess that it would be so much more comfortable for him that he might be able to learn quite soon.

I am truly sorry your having such a rough time with whatever your facing. I don't know what it is, but god does and I pray he gives you the strength you need to go thru it. As for our sweet Tripp, my heart just breaks for him. I hate to hear he is not doing so well again,you do not have to apologize for being away from the blog....You need time to yourself too and as much as we love you both we understand. Thanks for keeping us informed on what happening with your little man.

Courtney, I'm so sorry to hear he's not feeling well. Don't apologize, you are doing the best, most difficult job I could imagine. I am inspired by your day to day. I don't even know you, but I think about you guys all the time! sending love!

Courtney: Thanks for the update. I am so sorry that Tripp is having so many problems right now. You guys are such an inspiration to so many people. I know what you are going through and I am praying for you guys every single day. You are always in my thoughts and prayers. Keep the Faith Courtney. You are an amazing Mommy. God Bless!!! Love and Hugs Leah's Nana

So glad you posted - I had been so worried about all of you. We continue to pray for your sweet boy and for continued strength for you. I hope whatever you are struggling with becomes easier to handle. You are a strong woman and a loving mama.

Thanks for the update, but NO APOLOGIES!!!! You are first and foremost there to take care of Tripp's complex needs, and I hope can occasionally take some time for yourself. Please do that. It is so important. You are under such a strain and you need some "me" time. Blogging should be the last thing on your agenda. (Although I am grateful for the posts that allow us all to see your sweet rotten boy....). Prayers going out to all of you. Hang in there.

Kids sense everything. The best way to take care of Tripp is to take care of YOU, by ANY means necessary. So if you quit Bloggin for a time (or forever) we will all understand (though miss seeing him and hearing the updates)! I hope your village can help pull some of the weight and lighten the load.

I find it hard to keep up myself without the hurdles of EB to work around. A few days a week I have to put my computer and phone in the basement, close the door and just be with them with absolutely no distractions or temptations. Those are my kids best days.

You owe no-one in the blog world an explanation for anything! With all you have obviously happening in your life right now, the last thing you should worry about is apologizing to us. I feel confident saying that those of us that follow you but don't actually know you do so because (1) we love Tripp, (2) we are in awe of you, and (3) we want to give you prayer/support as best we can. If someone asks about posting, we just want to make sure you and your little man are doing well. Love Tripp, hug Tripp, and rejoice in the Lord.

sweet sweet trip, sweet sweet courtney, i SO wish things could be better for you, you deserve a break... I am sending you all my love and hoping things will get back to "normal" soon and we'll all enjoy Tripp's tricks again.

Thinking of you, Courtney. I know your mommy heart is breaking, sometimes things just never seem to let up, do they? Try if you can to pencil in a little time to get away, even for an hour. You will feel better and Tripp will be in good hands with your Mom. Prayers for Tripp and for you.

Just blogging around this afternoon and found your blog. I've read a lot of blogs. Some make you laugh, some inspire you and others have made me sad. Yours has shown me the strength and love that we all hope we can have for one another. Truely amazing. Your son is an inspiration or at least he should be to everyone who reads your page. Good speed and God Bless, the world of the internet can find you praying for people you only read about, and now your son is one for my prayers.Thank you for letting me visit.Susanhttp://amazingcouponanddiscountdeals.blogspot.com

i don't comment often but i read all the time. i think of y'all often and am in awe of your strength and i really admire you as a mama! i can't even begin to imagine the emotional toll it takes on you and your mom to do all of the stuff it takes to take care of an EB baby\child. soooo sorry tripp has been having a hard time breathing. poor guy can't seem to catch a break. you are an inspiration to me as a mom. much love, prayers, and blessings from ga~ erinerinand4boys.blogspot.com

I'm sure you're already doing this, but please talk to your palliative care team. This is what they're there for; you shouldn't be alone in navigating pain management for your son. If he's in pain, he needs more pain medicine. In the world of pediatric oncology, you give what you must to control the pain...you don't focus on dosage as much as effect. I wish I could give you some respite, even for a few hours. From here, I can pray, and let you know I think you're incredibly inspiring. Tripp may be little, but his life has weight and meaning and purpose, more so than most folks I've met.

Praying for you and Tripp, Courtney - know that you are loved by lots of people all over! I wish I could make this better for him. If there's anything you can think of that I can do to help, I'm an email away!

I just found your blog and want to share how touched I truly am. I am inspired by your love for you wonderful son and your faith. I am so glad you have your mother to hep you. My family and I said a Hail Mary with the intention of giving you, Tripp and you family healing and peace. I promise I will pray for you all every day.

I follow your blog from California. Just wanted to let you know your precious son is adorable. My thoughts and prayers are with you and your family. I hope that Tripp feels better soon and I hope that you get some much needed rest.

Well, I've typed two comments and I have NO clue where they went. Crazy internet!!

I just wanted to say that I just admire you so much for the things that you do for Tripp every single day. God most certainly knew what He was doing when he gave Tripp to you. I shudder to think what kind of like Tripp would have with another mom -eeeek!! I don't know how you stay as strong, humble and positive through all this because if I'm being honest; seeing Tripp's sweet little face just looks painful. And I don't mean that in a bad way at all -it just really makes me want to cry for him that he has to deal with such things. NO child should have to deal with ANY medical issues but I keep telling myself (with my son who has seizures) that God can see the BIG picture; I can only see a tiny sliver of it. It doesn't really make it any easier, but it does give me perspective.

You are an amazing mommy to Tripp and I can't fathom how you do it all. But, you do. And Tripp is very blessed to have you. Keep looking UP and rest in the peace that only HE can give you.

I hope Tripp feels better soon. I can't imagine how painful it must be for him, and for you. I'll keep you guys in my prayers. Maybe, the docs could prescribe a small dose of an anti-anxiety for him to take prior to his bath. This frequently helps (I'm a nurse), and might make it so much better for him and you. My heart goes out to your little guy.Carla Spradlin, Portsmouth, Ohio

You are AMAZING and so is TRIPP!! Our daughter is much like you in a daily struggle and making the best of things and trying to stay optimistic with faith that it's all in God's hands. Her little guy has NALD.

I can't imagine how much more stress it adds with Tripp's skin and how to handle it all. What a sweet boy! You and he are in our prayers!! (((HUGS))) for you and I'll just blow him a kiss.

just wanted to let you know that I am still praying every day for you and little Tripp. You are my HERO-- no matter what you think of yourself.(not to put any kind of pressure on you--- just want you to know that you are tope rate in my book)